My doctor found a lump at a yearly exam on 1/18/10. Within one month, I have had a mammogram, ultrasound, biopsy, a lumpectomy on 2/12 and then another surgery today to remove more breast tissue. My diagnosis is a phyllodes tumor. The tumor was sent to a specialist out of state who specializes in phyllodes tumors. He determined that not enough tissue was taken on 2/12 so I had the second surgery today to be sure. I am confused by what little information there is about these tumors. Some websites show that all phyllodes tumors are considered breast cancer (even benign ones) because they have a high probability to become malignant. I would appreciate any information I could get to learn more about the tumors and whether they truly are all considered breast cancer or not. Thank you for your help.

Sorry to hear that. I too face a similar problem. My mammogram and ultrsound says probably benign "complex fibroadenoma" on my left breast, inner mid/upper quadrant, not near areola. it grew rather fast, more than doubling in the last 3 months. and it's now 3cm across. My surgeon offered me 2 choices:

Personally i'd prefer a single lumpectomy, since i'm pretty sure i want excision, and don't want 2 operations in the worst case. but the surgeon seems very unwilling to do so.

Oh well. Mind telling me how fast does your tumor grow? how big they are currently and in the past and how long have you noticed them etc.? And any other information?

The problem with phyllodes is that it's such a rare tumor (1% of all malignant breast tumors), very few docs have seen a lot of them and specialize them. very few drug companies would customize drugs/therapy to target them. That's why chemo/radiation doesn't work on them, and death rate quite high for malign tumors. So patients need to find each other and share information, like growth rate, size of tumor, location, pathology report.

Also, remember, if you had your tumor excised, remember to ask how you can access the left-over samples. so in future if more genetic results are available, tests can be done on them.

jenrio, thank you for your reply. I am sorry to hear about your situation.

My surgeon had thought that he got all the the tumor and tissue the first time. Samples were sent to a doctor at Cornell who is considered a specialist in phyllodes. He said that the tumor had spread out into more breast tissue and so I would need to go back for another surgery to remove more. The second surgery was 2/26, exactly two weeks after the first. I hope this is it for surgeries for a good long time!

The tumor that I had removed was 3cm. I had a mammogram 12/30/08 with no abnormal findings. I did not notice the lump before 1/18/10, when it was found by my doctor. There were no signs of it on the mammogram from 12/30/08.

I agree with you 100% about people with phyllodes tumors exchanging information. (I saw your link to the google group you created but the link said it was broken.) It looks like we have become the "experts" in phyllodes tumors because we want to and because we have to. It seems that because there is so little information, we need to take an even more active role in our health. Since my doctor first started talking about phyllodes tumors, I have been researching them day and night and pretty much coming up with nothing or finding conflicting information. That is why I started this post (on the day of my second surgery) to reach out to others in the same situation.

I hope you are still out there somewhere. I was also just diagnosed with this type of cancer and am terrified. I have had this lump for probably a year. Just figured it was another cyst and I have always had a lot of cysts in my breasts. I finally decided to ask for a needle aspiration, again thinking it was a cyst that was growing. I waited a month because the receptionist at UNC said my insurance wouldn't cover the mammogram unless it was one year from the last one, so I made the exam for exactly 1 year from the last mammogram. After having the mammogram and an ultrasound, it was determined that I had some kind of tumor. Doctor said it was most likely a fibroid adonoma. They did a needle biopsy that came back atypia, so he did an excision biopsy and this came back as cancer. I'll be going back on Friday for 2nd surgery to widen the margins.

After reading many articles, forums, etc. I'm now more afraid of it coming back and that this might be fatal. Am wondering what's happened to the two of you after one year. I'm hoping you are both well and have not had any recurrance.

I just found a little lump two months ago--Feb. 2011--while doing a self breast check and then had the needle biopsy and mamo and ultrasound and all the docs. said it all looked like a fibroid. I decided to have it removed anyway just a week ago--April 23,2011. Now my doctor said he is having it sent in for a second opion to rule out phyllodes. Did your doctors determine it was phyllodes right away--b/c i am surprised to hear this now after he was so sure it was just a fibroidanoma. I am waiting for results. Clearly I am nervous....as he didn't think it was phyllodes so he didn't go for extra margins--he just took the tumor. Does this seem like a routine thing to send tumor off for a second opinion?

My surgeon also thought I just had a fibroadonoma, and when they did the needle biopsy they saw some cells that were aytpia. He took the tumor out and had the whole thing biopsied and that's when it was determined it was Phyllodes. If that's what you have, welcome to being literally one in a million. My surgeon then had to go back in for a second surgery to widen the margins. It was frustrating, but glad I had all of this done and the good news in my case at least was that it was a low grade phyllodes, so it hadn't spread anywhere and they were able to get good margins, so no radiation. By the way, chemo is supposedly not effective for Phyllodes. You may also want to look at the rare cancer website and search for Phyllodes as there are many more folks over on that forum than this one.

Best of luck to you! I hope for your sake that it is not Phyllodes, but if it is, we are here to support you.

Hello ladies. I am new to this forum and just checking in to find information. As you know, a phylloides isn't well documented.

I just had a mastectomy 2 weeks ago to remove a phylloides tumor......14x16x 6 cm. Yes, that is pretty huge. It started at 3 cm nearly 5 years ago. First diagnosed as a fibroadenoma that would probably go away at menopause, I waited and kept it 'at bay' in my opinion with great nutrition and herbal healing but in the last year and a half...with a failing marriage, a new job and huge stress, it took off and i couldn't wait any longer.

I have been doctoring at the Mayo and have so many wonderful things to say about them but even the Mayo doesn't understand these tumors well.

I am confident that it is gone, my skin and lymph nodes were 'clean' and i am moving on with my life as if I am permanently well. Thankfully my marriage is primarily over and i have the most wonderful man by my side through all of this. Although I have many 'moments' and 'days' of fear, essentially, stuff like this can't get me down and I refuse to let it rob me of my wonderful life.

You will all come through this shining.

By the way, since no one else seems to be doing much with these tumors, I would certainly love to hear from you - your occupations, your hobbies, just trying to figure out if there is any kind of connection to those of us that have phylloides and what may be messing with us.

Amy, Welcome to the very special Phyllodes club. We are each one in a million! There is some good information you can find on the rare cancer forum, www.rare-cancer.org and look for Phyllodes.

The only doctor I know who has done some studies on this is Dr. Barth at the University of Dartmouth-Hitchcock in New Hampshire, here's the URL to the study: cancer.dartmouth.edu/pf/clinic...

Seems like you have the right attitude. I had my second surgery to widen the margins in March and try to keep myself busy and occupied and have the same feelings as you do. This is over now. Time to move on. However, no reason not to be more careful about diet, exercise and generally keeping the odds in our favor!

It has been almost one year since my first (and second) surgeries. Just thinking about what a very different place I was in last year. Now, my sister has IDC, ER+, PR+, HER2-. So, I'll be holding her hand this time around. Can't believe we both have had some kind of BC.

Also, for those who haven't found it yet, there' s a really great PT Facebook page. Here's the link: https://www.facebook.com/groups/126241111043/

Hi ladies and phyllodes tumor sisters. I am new to this forum and desperate for info. I was diagnosed with a PT after a lumpectomy when I was 23 years old. It was benign and, of course, the surgeon thought it was a fibro and didn't take enough margin. After many years of follow up, scares, etc. I thought I was safe. Last week, 11 years later I found another lump in my other breast. Went quickly for an ultrasound and met with the surgeon within 24 hours. Turns out he suspects it is another PT, and doesn't think it is self-contained.

I am 34 years old with 2 kids - and absolutely terrified. This one is already 3.5 by 4.75 cm after 3 weeks of notice and isn't the perfectly round mass that I had before. He put in the surgery orders as "cancer" to quote "make the schedulers jump," so I suspect I will get scheduled tomorrow for this week. He said that at a minimum, the scar will be ~6 inches long, but that the disfigurement should be minimal.

My fear is that it is cancer - a cancer no one really seems to know anything about or really care about since it is so rare. I am trying to stay positive, but the truth of the matter is that I am 34 years old and I adore my life. Please - any support or information would be very helpful. All the articles I can find are very contradicting.

JFish: I am so sorry to hear about your news. I sure hope it is not as bad as suspected. I highly encourage you to get on the Facebook group page for Phyllodes. It is quite active and has a lot more members on it. Just type in Phyllodes in the Facebook search and the group should show up. If that doesn't work, send me a direct email (as I'm not on the BC forum that often these days) and I'll send you the link.

I saw your post about your having a masectomy for your phyllodes tumor. I wanted to ask how you're doing now? I believe I am about to be diagnosed with the same. My tumor sounds like it is the same size as yours was. Now to find out if malignant or not. How were you able to be treated by the Mayo Clinic? I have Kaiser insurance and live in Hawaii, and would really like to have access to better specialists equipped to address these things. Any suggestions for me.

I was recently diagnosed with a borderline phyllodes tumor... they did an excisional biopsy, it turned out to be borderline, so now I need to go back in to have more taken out and have the option of radiation.... I am curious if anyone has had radiation for a phyllodes before, and their experience on that. I think Phyllodes is difficult to be diagnosed with because it is hard to explain to friends and family as well. It just this whole ball of uncertainty! My next surgery is scheduled for mid June. My surgeon did say, because we are doing two surgeries there is more likely to be scarring and have the breast look irregular... Do people often get reconstruction for a phyllodes? I am lucky the tumor was very close to my nipple, so it was easy to detect, and the surgeon can cut in a half moon shape around the nipple to access everything, which leaves a little less scarring! I was suprised after the first surgery that my breast actually looked pretty good. I would also love to hear if anyone has had the phyllodes tumor reoccur. After having been through the surgery once, the second one doesnt seem as scary. If anything now I feel like I want as much removed as possible, as soon as possible. I did have a month or so to accept that I may completely lose the appearance of my breasts though. I find the tumor at the end of february and it was around 4cm. They started with an ultrasound, a biopsy, then the excisional biopsy, and now are going in to remove more tissue. The first biopsy did say it was benign, or that it could be a fibroadenoma, so I was expecting good news. I got pregnant in mid april, and unfortuanately lost the baby a few days ago... however I am wondering if the hornmones from it had anything to do with the results changing, or if it the first biopsy is commonly wrong. I'm glad this thread has started :).

Hello! I am 23 years old and I have had a lump in my left breast for about 6 months. I had a baby about 5 months ago and have been breastfeeding and I assumed that the lump was related to lactation until it started to grow. I had an ultrasound and the doctors said they had never seen anything like it and so they sent me to a specialist. I saw him today and he did a core needle biopsy but he says he suspects phyllodes based on the way that the tumor looks in the ultrasound. It is a solid mass with tiny cysts throughout it about 3cm wide. It is painless and moves a little bit. The two things that looks weird about it to them is the fact that it is part solid and part cystic and that part of it has well defined edges and part of it doesn't. The original radiologist who saw me said she had no idea and got another doctor and he said it was the most unsual thing he had ever seen. Then the specialist today mentioned phyllodes but I am pretty young for it. Does this sound like phyllodes? He is expecting the biopsy reports monday or tuesday but the waiting is driving me crazy. Is there anything I should know?

Hi all, I have just got my results back today and he said Boarderline Phyllodes but I will need a mastectomy. I'm small breasted and it's quite large and growing. And I've already had a giant fibroadenoma removed from the same spot. The surgeon recomended reconstruction. Talking to the plastic surgeon in a few days. I'm really confused. I'm glad this site is here.

@nlv23
you're not too young to have a phyllodes tumor. I had a lumpectomy when I was 20 and it was a phyllodes tumor that was turning malignant. 6months later I had more growing but oj both breasts and i recently had a double mastecomy so i wouodnt have to deal with anymore internal scarring than i needed (turns out i was a high risk when i got the patjology results a week after surgery).
Anyway, that does sound unusual, however I'm not an expert. Have they done a biopsy on you yet to know if it is a phyllodes? I never had pain when I had the phyllodes but cysts can cause some discomfort or pain. So it could be part phyllodes and part cyst (it that's possible. Good luck!!

@tessamess
This seems silly to say but I'm petite and was quite small breasted too. I had a phyllodes that was a size of a pingpong ball! It didn't change my shape but I noticed a slight size difference? I was pretty small. It never bothered me but my scar arouns my nipple. Will you be having a single or double mastectomy? Good luck!

Thanks for your reply. I'm large framed and a bit overweight but i only have small B cups.

I will be talking with my sugeon about having both taken, I brought it up, he didn't, my sister asked me first...i don't want that but it might be the best thing to do. I'm even leaning against recon right now, even after talking with the PS. Both surgeons really think i should do recon but i read that if you are over a BMI of 30 it's risky. I've been a moderate smoker for a long time too so i'm afraid of being under for a long period of time.

Are implants with expanders really a 4 month long process? How is it coming along for you?

I think sharing our stories so we can learn from each others' is a great idea. So here's mine:

I first noticed a breast lump when I was 20. I was sent for ultrasounds and it was determined that the two lumps they saw were fibroadenomas. Over the next five years, these lumps continued to grow pretty steadily, so in 2008 I decided to have them taken out before they grew so big I didn't get a choice in the matter. Both tumours were removed by lumpectomy, with no wide margins taken. Post-surgical pathology found phyllodes cells in both lumps, but no further tissue was taken.

Over the next few years, I went for regular ultrasounds, and although new small fibroadenomas appeared, none of these were considered a risk.

This year, I had started to notice occasional pain in my left breast, radiating up towards the armpit. I've also noticed flaky skin on my left nipple and some clear discharge.

In July 2012 I followed this up with my specialist, who sent me for a new ultrasound. A new lump appeared, about 1cm x 1cm, near the site of the two phyllodes taken out in 2008. Because of its proximity to the old tumours, my specialist recommended a core biopsy. Results from this biopsy came back with accelerated cell change, but no definite diagnosis. But given that the tumour looks so much like a fibroadenoma, my specialist believes it is another phyllodes lump. Because of the biopsy results, I then had two other lumps in my left breast biopsied, but they seem to be in the clear.

On Monday, I go into hospital to have the new suspicious lump removed by lumpectomy. I haven't been told how wide the margin will be, that remains to be seen.

But my fingers are crossed that it all turns out well.

I'm only 26, and am told it's very rare for phyllodes to recur. So I guess I'm special? In a really unfortunate kind of way?

@TessaMe:I don't know about the BMI part, but I can understand the smoking part and being under for too long.Depends my surgeon says about 3-4 months because the breast have to form a scar capsule to hold the implants in place for the TE and implant exchange.It's coming okay for me now. My exchange is in December. It works out well since I have classes now and I can do it during winter break and back to school in spring. I think recon. would be a good thing for all women, no matter what age we are, we do have some degree of insecurity about losing our breasts.

@Betsy-I don't think you're alone about it reoccuring. I had my lumpectomy at 19 on my right breast and six mths later I found more on my left and right. So I skipped the biopsy and did a bmx. My pathology report said it was baby benign tumors this time. I'll be 22 this year. Why don't you consider of having a bmx instead??

Today I was diagnosed with a phyllodes tumor. I have had an ultra sound and am now waiting on a biopsy but I've already talked to my doctor about removal. I'm 18 years old and this is all really shocking to me. I'm surprised they are so certain its phyllodes and not a fibroadenoma (much more common for my age). I will post the results from the biopsy. If anyone has any words of wisdom please feel free to share. Thank you for your stories.

Hi x2011,
I do not know much about phyllodes, but I know it is rare and occurs more in young people? I really hope and I'll say it pray today that your biopsy goes really well and they can just take care of everything. I hope your mom or a friend or sister can go with you. Take care of yourself and I am thinking of you!
Love, Amy Lynn

Hope you get good news. There is a really good, very active group of us Phyllodes folks on Facebook. Just type in Phyllodes to find it. Your membership is confidential. I have found it a good group to be in.

I am quite surprised they told you it was a phyllodes tumor without a biopsy. They can only tell if it is phyllodes through pathology. Usually they assume it's a fibroadenoma until they gey path back, but if you do get an excisional biopsy BE SURE they get clear margins while in there. If they do not you will have to go back for reexcision to get clear margins because some say it can come back if all of the cells are not removed. Good luck

Hi, ladies! Does anyone still post here? I had a Borderline Phyllodes tumor removed by WLE (2nd surgery for margins) three years ago. Now I'm back with Invasive Ductal Carcinoma with significant node involvement. Totally different experience this time . . . going from ridiculously rare to ridiculously common!

Wow, this is amazing I didnt realize there was other girls so young with a phyllodes tumor. I found mine when I was 17 at the beginning of this year. I am now 18, had it removed and am completly healthy. I am so glad I found this group I feel better just knowing there are others. I really dont know what to say right now, I just signed up looking for people to talk to in the same situation. I am wondering my last surgery was 3 months ago, the lump was closer to the outside of my breast on the left side. I am finding that I am getting really shart shooting pains from the insition down my left arm. Has anyone else had this happen to?

Hi, Annie! Phyllodes seem to crop up in young women but, fortunately, they are easily taken care of if you get to them before they get out of hand. Sounds like yours was caught good and early! I, too, had shooting pains from the incision for a few weeks or even months. It takes a lot longer to heal completely than I realized! My surgeon told me the other day that it will be a full year before my body is fully healed from the mastectomy I had in September (fortunately it has nothing to do with the phyllodes!).

Hi my name is Serina...I'm having a prophylactic mastectomy with reconstruction surgery sometime next month except I'm planning on having expanders placed because I have large breasts. My surgeon said they would look more distorted if I went to the direct to implant option. its hard to find people to talk to that have had a prophyllactic mastectomy rather than having it because being diagnosed with cancer (its different because of radiation/chemo) I'm excited I found this because I too,have a rare type of tumor called Phyllodes tumors!!! I've had them sicne a very young age... (12 yrs old!!) From years of experience...I've been told they can be benign for years then turn into cancer at any time... I have to go get breast MRIs and ultrasounds every 3-4 mos because of that. My grandmother and her 3 sisters have had breast cancer and my mom died of uteran sarcoma...so I am very cautious...long story short... I took the genetic blood tests...all negative...my Drs were very suprised. My first lumpectomy was at age 12 then again at 16 and again at 20 and at 25 I've also had 5 needle biopsies throughout the years. As of right now I have 10 tumors between both breasts (most of them are small but there are 2 large ones.) I wanted to post this blog to talk about different things to people...get different opinions. :) I'm planning a nipple sparing mastectomy...not sure if I would feel comfortable with no nipple... they said it was ok because it hasnt actually turned into "cancer" yet but he said because of my larger breasts they may sag and ripple.... so it might not be a bad idea to remove the nipple and take some skin...anyone else ever have this with larger breasts? (in between a D and a DD cup) I'm sure there are other people out there that have larger breasts...if you have...give me your opinion! :) also I'm trying to prepare myself and my house for the surgery....I have a 3 1/2 yr old so I will be relying on my husband alot to help with her...any ideas on what to buy ahead of time to help myself? or things to prepare ahead of time?

Its AWESOME hearing people with the same thing as me!! I cant tell you how many people have NO IDEA what Phyllodes tumors are!!